For parents of NICU babies, more than a hospital stay

NICU reunion

Photo for The Baltimore Sun by Chiaki Kawajiri

Brittany Nimmo Hurtt, left, shares a happy moment with her son Trevor Hurtt, 19 months, and her husband, Timothy Hurtt. Brittany Hurtt was a patient at Howard County General Hospital's Neonatal Intensive Care Unit in 1992.

Brittany Nimmo Hurtt, left, shares a happy moment with her son Trevor Hurtt, 19 months, and her husband, Timothy Hurtt. Brittany Hurtt was a patient at Howard County General Hospital's Neonatal Intensive Care Unit in 1992. (Photo for The Baltimore Sun by Chiaki Kawajiri)

Carrie Wells, The Baltimore Sun

Moira Mattingly had only been pregnant for about 24 weeks — still plenty of time, she thought, to pick a name for her daughter.

So when she went to the hospital with some discomfort — small pains coming every seven minutes — the news that she was going into labor was alarming. The baby's lungs weren't fully formed, her skin barely so. Mattingly was also confronting sobering statistics: Babies born before 26 weeks, called micropreemies, can easily die and have a high chance of lifelong medical problems like cerebral palsy and blindness.

"I told my husband, 'We have to have a name, even if it's for a tombstone,'" Mattingly said. They settled on Emily.

More than eight years later, on Sunday, Mattingly brought Emily Leco to meet other children who spent time in Howard County General Hospital's Neonatal Intensive Care Unit, and to reunite with the nurses who supported her family while Emily spent more than four months in the NICU.

The hospital used to have reunions for the families of the NICU babies every year, but amid the recession, the event was canceled. Sunday, the hospital held its first reunion since 2008, drawing more than 200 babies, children, parents and nurses to a cowboy-themed ballroom in Windsor Mill.

Some babies' stay in the NICU is mercifully short. Other parents, like Mattingly and her husband, Jeff Leco, go there every day for months, forming bonds with the nurses and doctors who care for their children. Two former NICU babies who gathered Sunday were 21 years old.

Just conceiving Emily was a miracle of modern science. Jeff Leco had testicular cancer as a teenager but had frozen his sperm, and by the time the Ellicott City couple was ready for a baby, his specimens were 21 years old. Mattingly also produced fewer eggs than normal and miscarried twins at 11 weeks during a previous attempt at in vitro fertilization.

When Mattingly was admitted to the hospital in October 2004, doctors pumped her full of drugs to stop the labor, and she stayed in that state for five days, until the baby's heart rate started dropping and she had to be deliveredvia Cesarean section. Emily was born at 25 weeks, weighing 11/2 pounds and only 13 inches long — "about the size of an old school telephone," Mattingly said. A typical pregnancy lasts 40 weeks.

The extra days Emily spent in the womb would increase her chances of survival, but she could not breathe on her own and needed a ventilator. Her skin was so fragile that she required a humidifier, and her parents were not allowed to hold her for the first two weeks, lest her skin tear. Emily's eyes were still fused shut.

Early on, Emily would suddenly stop breathing from time to time and would have to be resuscitated. Mattingly remembers once, when Emily was about 2 weeks old, doctors had to resuscitate her four times.

Mattingly kept a journal to mark the milestones and the daily experiences. More than 60 blood transfusions. Anemia "a million times." Laser surgery to keep Emily's retinas from detaching. Then, a few weeks in, knowing that Emily would likely survive.

After three months, when Emily came off the ventilator and her parents heard her cry for the first time, "that was a huge, huge moment," Mattingly said. Finally, Emily was discharged after 131 days in the NICU.

Meanwhile, Mattingly came to know the NICU doctors and nurses, who would tell the couple things like which color bow they put in Emily's hair that day and let Mattingly cry on their shoulders during the rough patches. One nurse, knowing Emily would not be home for Christmas, pressed the baby's tiny feet into a plaster tablet and gave it to the couple as an ornament.

"The doctors and nurses who work in the hospital are a different breed of person," Mattingly said. "I couldn't do what those women do."

Mary Ann Kapcala is one of those nurses, and has worked in Howard County General Hospital's NICU since it was built 40 years ago.

"Forty years ago, you would never see a 24-weeker," Kapcala said Sunday, in between accepting thank-yous from former patients and their parents. "Under 30 weeks would be a challenge; now it's routine."

Kapcala has seen more babies die than she cares to count, but she says the rewards of the job — seeing a baby leave her care and go home — have kept her from retirement. Most of the hospital's NICU babies are assigned one regular nurse because it's believed it helps their growth to see a familiar face.

"You can get pretty attached," Kapcala said. "Of course, once they're discharged, we're happy to see them go."

Eight years after her harrowing birth, Emily is a healthy second-grader at Rockburn Elementary School in Elkridge. She has a budding sense of fashion, wears colorful glasses, and her favorite class is art, where she can draw and paint. She climbs trees and loves the ski trips the family takes with her adopted brother, 5-year-old Michael.

Mattingly, 45, says she still worries about Emily. Recently, she wrote down her daughter's story for the hospital to share with other parents.

"Sometimes I go into Emily's room to see her sleeping — a tall, strong, healthy 8-year-old peacefully dreaming, the tiny needle scars on her wrists and heels a reminder of her time in the NICU," Mattingly wrote. "I lay down next to her and breathe in the smell of her hair. No wires, no needles, no glass wall … just us."